6 monthly checkups

A wonderful visit to Belfast to see Johan Gant and Nikki Tweed become Mr and Mrs Gant on 4th July.  Fabulous day and so pleased Johan was able to source and I was able to secure flights to enable me to be there between medical appointments.

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This morning, I was up and out of the hotel in Northern Ireland at the delightful hour of 4.45 A.M.… a time that I’ve not seen for quite a while!  Quick dash to the airport, a small flight to Gatwick, train to Clapham, bus to the Kings Road and then a short walk to the Royal Marsden Hospital.  Whoohooo I even managed to do all that AND be early for my appointments.

You see it was my six monthly checkups today.  My July regimen is ultrasound, mammogram and a chest x-ray.

There has been some discussion within the medical world that checkups are unnecessary, worrisome to the patients and costly to the NHS purse.  It’s been suggested that perhaps cancer patients should have less frequency in checkups.  Or no checkups at all BUT rely on patients raising concerns or with ‘quick access’ back into the system should we find any lumps.  This CANNOT happen.

I’ve been fabulously fortunate in that my medical teams have advocated for me to have a thorough checkup regimen agreed.

Today I was grateful for their professionalism and care of my health and these regular checks.

My mammogram slides have shown some spots that need further investigation.  The radiologist doesn’t believe that they are more Phyllodes tumours but suggests that they may be a scattering of DCIS (ductal carcinoma in situ). Because of the location of the ‘spots’ she has suggested that I come back for a stereotactic biopsy where they will be able to suction out several tissue samples.   I will hear next week about a date for this biopsy but expect it to be in the next week or so.  Following the biopsy, the samples will be sent to the pathologists.  Then the MDT (multi-disciplinary team) will assess the results and advice what the next steps are.

I’ll keep you posted…

Checks

OK so there’s a huge chunk of time missing from this journey… I’ve been busy.. some good, some not so good and I promise to update you on all that soon.

BUT, just thought I’d drop by to tell you that today I received the results of my latest follow up mammogram… Not sure why I was so nervous but to say I hardly slept last night would be an understatement! Today wasn’t helped when I was taken into the ‘bad news room’ – there’s one in every clinic around the world… And sat nervously for what seemed like hours before my consultant came in accompanied by a nurse (also not a good sign as usually they’re there when bad news needs to be broken)… Can’t tell you how relieved I was when my consultant (who is the best in the world) said all was clear. He then took the time to check I was ok, felt ok, wasn’t worried and also queried the pains I constantly have – not bad but niggles and remind me what I’ve been through. Anyhow at the end of our chat he said he’d be happier if I continued on my course of follow up appointments of annual mammograms with 6 month interval of ultrasound checks.

Can’t tell you how ‘looked after’ I feel and how, just knowing that I continue to be monitored takes away any anxiety I may have.

(oh and the nurse was there as she wanted to find out if I’d be happy to be part of a clinical trial looking at genetics and familial history for patients diagnosed with DCIS, which they found when they went in for clear margins following removal of my malignant phyllodes. Of course I’m happy to be in any clinical trial that may help others in the future)

Sooooooo I’ve had a couple of cheeky glasses of champers tonight…. Cos I could! Xxx

Check ups

I am so pleased to tell you that today I had the results of this six monthly ultrasound check up and it’s all GOOD news. Can still see an area on the ultrasound that appeared in last check up but it’s shrunk so they believe (from the mammogram and biopsy of last check) that it’s scar tissue that is now disappearing slowly too.

The consultant even had a suggestion to help with the pains that I still frequently get and that has worried me…. as I know from discussions with others and you will have read about, breast tissue has memories and the thought is that my breast tissue is just recreating the most recent pain when it should probably be just whinging a bit that it’s cold or something! Well the consultant suggested that I rub ibuleve gel on the painful area for a few consecutive days (following instructions depending on strength). She believes that this may numb the nerve endings that have been cut and reduce/stop the pain. I’m going to give it a go and if it works, tell everyone else that has also made comments about having post-op pain that the doctors say isn’t a recurrence! How fab would that be to be finally pain free and tumour free too?

Snowing again

Sorry it’s been a while that I updated on me (gosh that sounds selfish!). Firstly let me say that it isn’t because I didn’t want to write or know that I should keep you all informed but more because I’ve been running my little feet off and being busier than a busy thing from busyville… which is pretty busy.

Healthwise – I’m doing OK. No more scans or tests since I last wrote to you (next one is in January) and mostly feeling OK. Am still incredibly tired sometimes and now have some liquid B12 and also sun chlorella tablets, having a) discovered that others diagnosed with phyllodes appear to be given B12 injections to help with fatigue for some time after diagnosis and b) researching and asking questions of people in the know! So, are they working? Yes, I think so, but must remember to take them regularly so effectiveness can really be judged! We’ll see but I know that I can’t cope with the nausea fatigue that I get sometimes and which makes me take to my bed!

Emotionally – Again, I’m doing OK. A few wobbles every now and then thinking about Mum and wondering what she would say to things but also worrying about if the cancer will return. I used to think that it was ridiculous that people after they’ve been ‘cured’ would still worry about it… what I’ve learnt is a) although the surgeons have removed the tumour (so wonderfully) there is still a chance of recurrence, therefore there is never a ‘cure’ but simply a hope; and b) there is rarely a day that I don’t think about it or worry about the pain being more than just a twinge; and c) I now also worry that I’m turning into a hypochondriac – whatever happened to the me that didn’t get ill? So yes, I do have a cry every now and then and yes, I do still worry about it all and yes, I do find myself getting cross with myself that I can’t cope (sometimes).

Physically – Ahem at the risk of saying I’m OK, I’m OK. I still get pain in my chest, sometimes a dull pain, sometimes a burning sensation and sometimes a sharp stabbing. It’s not constant and some days there’s nothing at all. I’m also trying to be good and checking for any new lumps… and there are a few but I don’t really know if I am Miss Lumpy Bumpy (as my consultant calls me) and therefore if this is ‘normal’ or anything to worry about. I did worry about it a few weeks ago but have decided to stop being paranoid pants and monitor the lumpiness with a view to my next check in January anyway. You see I’m not a hypochondriac!

Working – Voluntary. As you know I’m keen that I use my experiences to make a difference for others.. I might not be able to change the world but I can at least tweak it a little bit. I also discovered that the majority of volunteers in the ‘cancer world’ are either retired or work within the health service. This has meant that I’m often the youngest person on the committee/board/group – so hahaha to all those of you who think I’m old! So… drumroll…. my new voluntary roles as part of 1) St George’s Hospital Patient Issues Committee 2) South West London Cancer Network Partnership 3) North West London Cancer Network Partnership 4) Wandsworth LINk 5) Kensington & Chelsea LINk Cancer Sub-Group 6) Patient Reviewer – National Cancer Information Pathways for National Cancer Action Team.

Living Beyond Diagnosis – charity. However the majority of my time is spent achieving a goal – to hold events in London for anyone affected by cancer. The first event I’m in the course of putting together with for anyone affected by breast cancer and will be in London in November 2011 for approximately 500 attendees. I am fully aware of the enormity of the challenge I have set myself and I don’t mind telling you that sometimes I ask myself why! I have no income and am surviving on the remaining money that I received in a critical illness insurance payment which, if I’m careful, will allow me to do this for a year. But you can bet your bottom dollar I wouldn’t be doing this if I didn’t totally believe in the importance of events like this and know, personally, the difference attending one made to my wellbeing. The event will sit alongside the wonderful services that we receive from the NHS, charities and organisations and I hope complement their work and also allow each of them to showcase what they are doing to the attendee audience.

There are the usual admin frustrations, such as the Charity Commission ‘holding our application’ until such time as we can prove we’ve raised £5,000. Not insurmountable however in order to be credible in the marketplace we need a charity registration number and indeed potential sponsors and exhibitors at the event will need the charity registration to evidence where their money is going! There are also a number of fantastic people who are organising events and runs etc who again need the charity registration number for their efforts. More than a little frustrating and has at low times made me wonder how anyone does it!

However I’m yet to meet a single person (private, medical, business or from a charity) who doesn’t endorse what I am doing and reiterate the need for this charity to be set up and the events to happen.

So there you have it… that’s what I’ve been doing. The website will be live soon but there’s a holding page for now from which you can download the ‘mission statement’ for the first event for breast cancer…. http://www.LivingBeyondDiagnosis.com and we’re putting up a PayPal button so that you can donate… however small it will be hugely appreciated – particularly so we can reach the £5k and get the charity registration through too!

Right-o back to work – although am desperate for a coffee and the roads are one big white snowblock at the moment… problem with living half way up a hill! Hmm posh green tea me thinks!

Words and pictures

I’m not sure what I’m feeling today so I thought I’d just create something different… this pretty much sums it all up,  my journey so far

My Journey in a Wordle

Wordle: Journey with Phyllodes

Before you all panic that there’s anything wrong, there isn’t.  I’m fine.  I’m just at an impasse in the journey.  I’ve found myself using words like ‘lucky’ ‘fortunate’ ‘grateful’ ‘thankful’ ‘positive’ ‘inspirational’ whilst talking about me and my journey.  I am all those things but then WHAM I am reminded that some people on this journey aren’t so lucky, fortunate or grateful.

We can bathe ourselves with pink ribbons, pink events, walk 5 or 10k, make people ‘breast aware’, congratulate the medics on the extended survival rates (however they actually calculate them) but some people aren’t smiling anymore and some are no longer with us or are struggling.  Please remember that although the pink ribbon and breast cancer awareness month may be intended to be jolly happy, clappy and upbeat, there are people who aren’t.  Simples.

Bravery

I was reminded this morning that not only is it blinking freezing in England in winter but also that not everyone is as fortunate as me.  For some people cancer is a horrifically scary journey and for those young diagnosed it must seem harder.  They have their life ahead of them, there is an eagerness to finish up at school, college, university and a rush to get on with life.  There are dreams of a future, a partnership, perhaps a family, pets, a property or career, a wedding, travel or a family Christmas.  Never in their mind would they have included cancer in their future and never in their mind would they think that they’re fighting to survive.  However this is a reality for so many people.  We hear of the great survivorship statistics and the improvements there have been in surgery and treatment.  We don’t hear about the concerns of recurrence or the statistics that don’t make it.  In the breast cancer world, I’m still hearing about girls who have been refused scans because ‘they’re too young’, only for them to discover months or even years later that they had cancer – usually the delay has meant a more aggressive stage too.

Let’s forget the myths.  Cancer DOES happen to the young and the beautiful.

I’ve spoken before about the lovely Jolene and once again, am asking that anyone reading this, spends a while thinking, praying, hoping (whatever you can) for her recovery.  She’s once again struggling and we need to support her.

A friend posted this song this morning for Jolene (ignore the video but the song and words are so poignant) click here

Brave by Jamie O’Neal

I been down about as low as anyone can get
The whole world was closin’ in
Couldn’t find a friend
No one else could help me
Had to walk through the fire alone
Life has brought me to my knees
And faith had led me home

Let the storm rage around me
I will stand, I will fight
And when the darkness surrounds me
I will make my own light
I may not win every battle
But I’ll get stronger with every fear I face
And I’ll be brave

I can be courageous and still be so afraid
I’ve discovered pain is the beginning to a change
Somewhere deep inside us
There’s a strength we don’t know we have
Just when you think you can’t go on
Suddenly there’s a path

Let the storm rage around me
I will stand, I will fight
And when the darkness surrounds me
I will make my own light
I may not win every battle
But I’ll get stronger with every fear I face
And I’ll be brave

Every time I get back up it gets harder to knock me down
‘Cause my soul’s on steady ground

Let the storm rage around me
I will stand, I will fight
And when the darkness surrounds me
I will make my own light
I may not win every battle
But I’ll get stronger with every fear I face
And I’ll be brave

I’ll be brave

No matter what age, no matter what diagnosis or wellness, being brave is difficult sometimes.

Guest blogging – www.bahtocancer.com

From the murky world of social networking where I’m trying to build up a good network of people involved in the cancer world for my charity, I saw a request to become a guest blogger on www.bahtocancer.com. I sent in an entry and it was posted today (as below). Do take time to look at the Bah! to cancer site, as there’s some very interesting articles and links to organisations and services too.
Questions

As the cancer survivor we are, ourselves, always very concerned about what to say and what not to say. About how to tell people how we’re feeling but without being too self-absorbing or showing that we’re scared and frightened. We’re also, at times, worried that if we ask for too many favours now how will we ask for any when we need them more.

I was asked recently for some advice by a concerned father-in-law of a newly diagnosed breast cancer survivor. He was feeling lost and worried about what to ask or how to ask; about what to do and what not to do. He wanted to help but didn’t want to overstep the mark or interfere. He was even worried about asking me for my opinion as he didn’t want to worry me either! However I was so very pleased that he did ask and hope that what I told him.

Cancer survivors take different courses of action in telling people. Some don’t say anything. Some only tell their immediate family/friends. Some write blogs. Some post updates on Facebook or twitter. Some write letters. Some write books. Some say it like it is and others only ever provide an edited version. I wrote a blog. For me, letting others know what was going on and how I felt via a blog saved me from the many calls and retelling the news. Getting it down on ‘paper’ also was cathartic in that I pouring out my inner most feelings, often verbalising something that I’d not yet thought through – some remained, some were deleted. The truth is everyone is different and, as in life, we handle our response to cancer differently too.

My advice to him was to ask his daughter-in-law what she’d like but a few things that I found comfort in:

  • Help with the little jobs.
  • Turning up with a refill of milk/bread/eggs/butter without being asked and without it being a ‘big shop’.
  • Little texts/emails just to say ‘hi’.
  • Don’t expect my reaction to be the same today as it was yesterday… each day is different on a cancer journey and the way we deal with it is different also.
  • Understand when I blow you out at the last minute for no particular excuse.
  • Let me know that you’re free for a lift to the hospital or any appointments and that it’s not ‘out of your way’.
  • Know that I know I look like I’ve been crying but don’t mention it directly, just give me a little hug.
  • Offer to help with the big stuff but don’t stop me doing the bits I can.
  • Don’t be offended if I tell you to bugga off and leave me alone – it’s not personal!

Just knowing that you’re there and can be relied upon is sometimes just enough too.

Blogging and all that it is

My world of blogging began for a reason that I’d never wish on anyone.  I gave cancer a try for you all.  I gave it a go.  Felt it’s pain.  Learned to deal with the emotions.  Cried about it.  Had it cut from me (twice).  And so much more… And I decided that it was rubbish and I didn’t want it.  So, I put it all back in the box, neatly packed it with those squigy polystyrene questionmarks and stuck a whole roll of packing tape around the box, so that nothing can escape… I then popped it into the letterbox marked ‘return to sender’!   (with no return address for me!).

So just so you know, noone else needs to try it out, it’s rubbish, don’t bother.

Part of the journey for me was finding a way to communicate with friends and family about how I felt or what was happening that day or how an appointment or a surgery went.  As much as I love you all, receiving call after call and recounting the story wasn’t going to help me look forward and beyond whatever the issue was that day.  Some people do this via facebook, some set up phone call trees so that everyone calls someone with an update but the person at the top only has to make a few calls.  And some blog.  What has been fantastic about this is that sometime when you didn’t know what to say or how to ask, you could just check in on the site and every now and then let me know you were doing so.  For me, it allowed me to tell you a lot more than I would face to face.  To perhaps put on ‘paper’ something that I wouldn’t know how to say.  I’ve also bumbled away, typing endless pages as a sort of ‘download’ mechanism for me, only to delete it before the page goes live.  It was cathartic for me but also allowed me to have a history/diary of events and somewhere to which I can refer and for newly diagnosed to reference.  I have been heartened that my site continues to support people looking for information about phyllodes but also saddened that it’s required.  I’ve had 3 people contact me from the UK in the past 4 days – hmmm me thinks it’s not as rare as they’d have us believe!

However at this point in my journey, I realise that you won’t be checking in so often to see how I am – because I’m OK, in fact I’m feeling really good about cancer knowing that I don’t have any more checks, scans or hospital appointments until January… somehow it’s released a little burden from my shoulders – but I would like to keep the blog up.  Perhaps not daily or weekly even but with updates regarding my journey but also with information and ‘life after cancer’ entries.  You see even though physically I feel OK, there are still the oddest of things and emotions that smack me in the face at random times.  Or I’m asked for help or advise that I think should be shared as a different perspective is always refreshing.

I would also like to keep you up to date with my new exciting charity venture –Living Beyond Diagnosis.  I truly hope that through this charity, I will be able to help thousands of people affected by cancer in the coming years.  My aim is to work with charities, hospitals and support organisations so that these events are firmly placed on the calender and complement the surgical and medical aspects of managing cancer in the UK.  I’ll keep you posted.

If you learn something from me…

I can’t believe that a year ago, I got up early and prepared myself for the day ahead – Mum’s funeral. How incredibly lucky was it that I couldn’t sleep. How incredibly lucky was it that I had two outfits and couldn’t decide between them. How incredibly lucky that the first didn’t quite cut the mustard. WHY? Because it meant I swapped back and forth between the outfits, adjusting the look and (sorry boys) adjusting my boobs into each bra. It was then, mid-change number 3 or 4, that I found the lump. Had I not done that, how long would it have been until I found it and then what would the delay have meant?

I didn’t check myself regularly. I didn’t know what my ‘normal me’ was. I always nodded sagely when I heard, saw or read that we should check regularly and if asked, I’d probably say ‘yes’ and not want to show myself up in that I didn’t know how to check them properly. Why don’t we include this in our school curriculum? We discuss contraceptives, sex, HIV, and a whole host of other things, but well being tips? Perhaps if I had really known how or perhaps not embarrassed to ask my GP, I might have known that this lump was irregular.

So, if you learn nothing from me, please check yourself regularly (men and women!) and here’s a guide how to… Click here for a video and instruction
Do this regularly so that you notice any differences.

Oh to sleep…

It sounds so ridiculous to not be able to sleep when I’m sooo damn tired. Maybe it is the lazy gene but in my defence your honour, I get to the point that I actually feel nauseous with tiredness. I can’t remember getting that exhausted since I misbehaved a lot in my 20s (and 30s) and stayed up for whole weekends…. that total burnout on a Sunday afternoon 😉 (hmmm maybe I should reintroduce it in my life on the basis that I can’t feel any more sick – party volunteers? ) BUT I’m not doing that any more. I’m sleeping for at least 10 hours a night (albeit perhaps restlessly). This morning I woke with 3 pillows at different corners of the room, me across the bed and my duvet upsidedown? Hmmm me thinks I wasn’t totally dreamless. And thank heavens the bed’s too high for my teddybears to run off to the spare room!

I mean, OK, maybe I’m a little nervous about the ‘results’ on Wednesday and my ‘awake me’ has been doing a great job at pretending that I can deal with it. I mean there’s nothing I can do but prepare for the worse and hope for the best. So preparation I have been doing. Hahaha – blinking haha, preparation in true AnnaGoAnna styley. They suggested that if it returned I’d have to be ready to have a mastectomy… well I’m not sure I’m totally ready to get rid of my boob… I’m sort of attached to it… it’s sort of balanced at the front… it fits neatly into some cool lingerie (OK so I’ve got a shoe and lingerie obsession)… my clothes fit with a pair of boobies… it’s been admired by a fair few in it’s time… it’s been fought over for use as a cushion… it’s been fought over for other reasons… it’s been… (oh actually I’d better stop thinking of previous uses, in case there’s a reli or two reading this… but I think you get the idea!).

Anyway, my preparation… I’ve done the reading up of stories. I’ve done the looking at pictures and reading medical info. I’ve done the options re reconstruction or surgeries. I’ve done the medical stuff. I’ve tried to prepare mentally but, can someone really prepare for that moment when they look down and there’s a space where once there was boob? I’m not sure I’m ready for that… or ever will be.

So AnnaGoAnna styley… if a mastectomy is required, I shall be doing a plastercast of my boobs, bronzing it and hanging it above my bed… that way, should there be any interest, I can point to my boobs and mention that if they’d been here earlier that’s what they would have seen! Not to mention the fun I can have making the plastercast! Ooh and I could sell minatures to raise money for the charity.. hmm maybe not eh! And yes, it would still mean that I could feel a ‘right tit’!

So preparation is complete.. I’m ready for the worst. However, Dear World, I’d prefer to hear that it’s just a little incy wincy bit of scar tissue. Or I’d be happy even with a radiographer’s joke.. Love Miss A GoAnna